MSA Trust welcomes Northern Ireland’s Rare Disease Strategy
For immediate release: Wednesday 4 November 2015
The Multiple System Atrophy Trust (MSA Trust) today (4/11) welcomed the Northern Ireland Government’s announcement that it will be launching a £3.3 million package to implement a rare disease strategy.
Karen Walker, Chief Executive Officer, of the UK and Ireland’s leading charity supporting people affected by multiple system atrophy (MSA), said:
“This is really excellent news. The MSA Trust is very keen to work with the Northern Irish Government to share best practice and our specialist knowledge of MSA.
“We have been supporting people living with MSA and funding research to find the cause and cure for almost twenty years. It is essential that any rare disease strategy listens to and works with the charities working on the ground and dealing with the challenges of living with a rare disease. We are very willing to get involved.”
MSA is a rare neurological disease that leads to premature death. It causes brain cells to shrink resulting in severe problems with multiple bodily functions. People with MSA often end up in need of 24/7 care, doubly incontinent, and in some cases unable to communicate, swallow or move. Men and women often get MSA in their fifties but symptoms can occur earlier or later.
Rosemary Arbuthnot, a Support Group Leader for the MSA Trust in Northern Ireland (NI) and Vice Chair of the NI Rare Disease Partnership, added:
“My husband died from MSA and I know, first hand, about the isolation associated with living with a rare disease. The MSA Trust’s Support Group network, our email and telephone support service and the work of MSA Nurse Specialists, helps tackle this. We would be delighted to work with parliamentarians and healthcare professionals working on the rare disease strategy.
“There are many organisations supporting people with rare diseases – collaboration and joined-up working is key. The MSA Trust works with charities and organisations throughout Europe and North America to raise awareness about MSA.”
The MSA Trust relies entirely on the voluntary donations of its supporters. Without their generosity it would be unable to continue its work of supporting people living with MSA.
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